Maidenhead grandfather’s role in trial to help cancer research

Date:07 September 2017

Maidenhead grandfather Neville Walton has urged others to learn about taking part in NHS research at a Berkshire event next week (12 September) after participating in a trial aimed at reducing the risk of swallowing problems in cancer patients.

The event will enable people to talk to NHS nurses and other staff about research into areas including dementia, heart disease, diabetes, stroke and mental health.

The public will also be able to learn about how they can participate in research trials taking place in Berkshire’s NHS.

Mr Walton, diagnosed with cancer in his left tonsil in May last year, said: “Research is crucial to finding out the broad spectrum of what is happening to patients.”

The 79-year-old grandfather-of-four had less radiotherapy than usual to see if it can have the same impact as standard treatment for oropharyngeal cancer yet without leading to swallowing problems as a side effect.

Standard treatment involves chemotherapy and radiotherapy but can lead to swallowing problems because, when killing cancer cells, it impacts the surrounding structure, including the swallowing muscles.

About 10 per cent of patients have to use a feeding tube for months or even years after chemotherapy and radiotherapy has finished.

Neville chose to take part in the Post-operative Adjuvant Treatment for HPV-pOsitive tumourS (PATHOS) trial, which looks into adjusting treatments for oropharyngeal cancer, which affects the throat, tonsils and tongue.

Participants were first given surgery to remove cancerous cells and then put into one of three risk groups based upon what was found: Group A, B or C.

In standard practice, those in group A receive no further treatment, B receive radiotherapy, and C receive chemotherapy and radiotherapy.

In the PATHOS trial, participants in Group B are randomly allocated to standard or reduced dose radiotherapy and participants in group C are randomly allocated to standard chemotherapy and radiotherapy or just the standard dose of radiotherapy alone.

Neville was a Group B patient, randomly allocated to reduced dose radiotherapy for the Cancer Research UK study, which will conclude in 2021.

He said: “When you read about some of the stuff that could happen after surgery, it is very frightening.

“I was fortunate in not having any problems swallowing or the need for feeding tubes, although now I do need a drink of water to help with my meals.”

Many oropharyngeal cancers are caused by Human Papillomavirus (HPV), an often symptomless virus that affects most people in their lifetimes.

Speaking of the events that led to his diagnosis, he said: “I had a sore throat. On examination my GP told me that she was suspicious that there was ‘something not right’ about that tonsil.

“She immediately referred me to the ear, nose and throat (ENT) unit at Wexham Park Hospital where the biopsy confirmed her suspicions that I had cancer there.

“I was referred to the head and neck cancer surgical unit in Oxford’s Churchill Hospital where I found out about the PATHOS research programme.”

Neville is still living an active life. He volunteers on The Methodist Church’s national Connexional Grants Committee - which provides funds for property, mission and ministry - and the South East Ministerial Probationers Committee, which oversees the training of probationer ministers over a two year period prior to their ordination as ministers.

He said: “I have follow up checks every three months and I’m pleased that the clinical team at the Churchill are keeping an eye on me.

“After having the lymph glands removed and radiotherapy, there have been no further signs of cancer. “I would have no problem in recommending anyone to take part in this particular programme. It involves no more than the routine clinical follow-up processes.

“The more patients who participate in research programmes, enhances the credibility of the data, enabling research-based treatment and care for benefit of future patients.

“This, I suppose made me want to take part in the PATHOS trial. It’s also about giving something back if it means it’s going to help others.

“I would like to express my gratitude and appreciation to all those involved in my care. Particularly Dr Aisha Ahmed, my GP, who made the early diagnosis and Mr Stuart Winter and all the members of his team for their excellent care over every step of the clinical process.”

The PATHOS trial is supported by the NIHR Clinical Research Network Thames Valley and South Midlands (CRN), which is part of the National Institute for Health Research, a Department of Health-funded organisation that provides funding to get trials up and running in the health service. The trial is funded by Cancer Research UK and sponsored by Velindre NHS Trust.

Stuart Winter, the ENT clinical research speciality lead at the CRN, said: “This trial will help us to judge how best to preserve swallowing functions in those treated with surgery and then radiotherapy or chemotherapy.

“The aim is to see if by modifying or reducing those treatments we can maximise function outcomes as well as survival ones.

“Being able to offer our patients the option of a trial has been hugely rewarding.

“This really allows us to involve patients in the decision making progress and talk to them in depth about their cancer care.”

Julianne Hollidge, research nurse at the Churchill Hospital, said: “Swallowing is such a basic function that we take it for granted until it is affected. Once that happens the impact on our everyday life can be difficult to deal with as it may affect the voice and the ability to eat and drink normally.“If PATHOS is able to demonstrate that reduced treatment is accompanied by a continued successful outcome to treatment then the quality of everyday life for these people will be considerably better.”

The Reading drop-in event has also been organised by the CRN and will be in the Victoria Hall at Reading Town Hall, a three minute walk from the train station. No booking is required. Disabled access is available.

Research helps develop better treatments to improve NHS care to save lives and improve quality of life.

This includes testing new drugs and other interventions and ways to use existing treatments to best effect. Patients are encouraged to ask their doctor about research opportunities and view trials seeking volunteers at The UK Clinical Trials Gateway www.ukctg.nihr.ac.uk.

Summary:

Maidenhead grandfather Neville Walton has urged others to learn about taking part in NHS research at a Berkshire event on Tuesday 12 September after participating in a trial aimed at reducing the risk of swallowing problems in cancer patients.